Advance Care Planning for Alzheimer’s Disease or Dementia

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If you have dementia or Alzheimer’s Disease, you are ineligible to request medication under Death with Dignity laws because your judgment or decision-making is impaired by the illness; if you are in early stages of these illnesses without cognitive impairment, you do not qualify because you do not have a terminal diagnosis.

While Alzheimer’s and other dementias are daunting diseases to face, advance planning may help provide a small amount of control to those who need it the most.

Our friends at End of Life of Washington have developed an advance directive specific to Alzheimer’s Disease and dementia. Alzheimer’s Disease and Dementia Mental Health Advance Directive is the first of its kind focused on these specific challenges. With a similar purpose as the living will, the Alzheimer’s and Dementia Advance Directive aims to help you make your intentions known when you are not in a place to speak for yourself.

Regular vs. Alzheimer’s/Dementia Advance Directive

Unlike the regular advance healthcare directive, which specifies what medical actions should be undertaken if you are too ill or incapacitated to make those decisions, the Alzheimer’s directive specified decisions which involve day-to-day choices. The directive provides opportunities for you to state your wishes about where you would like to be treated, who the preferred caregiver is, and who’s authorized to be your healthcare agent. The directive allows you to rank health care institutions in order of preference, and it even includes a space to discuss how you would like your pets to be cared for.

The Alzheimer’s directive is more about the challenges of living with Alzheimer’s, such as where are you going to live, how your care is going to be paid for, what to do with your pets, when to stop driving, what happens when you can no longer have intimate relations with your spouse or partner, not medical issues.

—Robb Miller, End of Life Washington

The Alzheimer’s directive cannot account for every care decision that will need to be made. To that end, write a personal history and care values statement, describing your personal history, values (including religious beliefs), and any other information for people to understand or at least have a sense of who you are. This empowers caregivers to make better decisions based on more complete information and allows them to fill in the gaps when situations hadn’t been anticipated.

Patient-Centered Language

The Alzheimer’s and dementia advance directive uses patient-centered language in order to empower those who have lost the ability to speak for themselves. The instructions include the advice: “This is your document. When completed, it should express your wishes. Cross out sections, sentences, or words with which you don’t agree.” One of the things this directive does well is reinforce that the person making this document doesn’t want their wishes to be ignored, doesn’t want someone else’s judgment substituted for their own.

No one can precisely predict the exact life changes that’ll occur during the course of a mental decline due to Alzheimer’s or dementia. No one can predict the type of health care setting the person will need or exactly how quickly one will progress from the early stages of dementia to the late stages of incapacitation. Alzheimer’s Disease presents a series of unknown questions, but this specialized advance directive combats this mystery. Miller summarized its usefulness,

[T]here is just no downside to documenting your wishes. Making advanced directives, whether medical or Alzheimer’s, is a gift. It is a gift to your loved ones, it is gift to your caregivers, it is a gift to your family.

—Robb Miller, End of Life Washington

History of the Alzheimer’s and Dementia Directive

A number of factors contributed to the creation of this directive. In 2003, Washington state enacted RCW 71.32, which allowed for the creation of Mental Health Advance Directives. This law inspired Seattle University School of Law Associate Professor Lisa Brodoff to think about a directive for Alzheimer’s and dementia.

In 2010, Brodoff published the article“Planning For Alzheimer’s Disease with Mental Health Advance Directives” in the Elder Law Journal. The articledescribes the life changes that accompany the Alzheimer’s disease progression, such as alterations to intimate relationships and the loss of driving abilities. Brodoff also described the practice of Medicaid divorces, in which people divorce to protect assets due to incredibly expensive Alzheimer’s care. Brodoff concluded this article with a suggestion for a personal advance directive addressing these scenarios. Brodoff then partnered with Robb Miller of Compassion & Choices of Washington, now End of Life Washington to co-author the directive.